“It turns out that what is really bothering the patient and what is really bothering the doctor can be radically different things…. patients are true experts in their disease”
– Dr Janet Woodcock. Director, Centre for Drug Evaluation1
PROs are reflections of how people feel about their own health, quality of life (QoL) and functioning, without interpretation by healthcare professionals.2 The information is collected via manual questionnaires or by electronic software that enables people to self-report on issues like symptoms, response to treatment, undesirable side effects, and effect on function in between visits. The resulting data can be used to show how interventions affect aspects of a person’s day-to-day life, and to inform quality improvement. Advocates for PROs cite three primary reasons for why they should be adopted in clinical practice:3
- Individuals are the best judges of the impact of their treatment on their pain, function, symptoms and QoL.
- PROs are a valuable support for patient-centred care.
- Systematic collection of PRO data informs efforts to improve quality and safety.
‘PROs represent an important resource for clinicians, particularly when choosing the best therapeutic strategies’
Because effective combination antiretroviral therapy (ART) has transformed HIV into a chronic condition,4,5 the burden of disease for people living with HIV (PLHIV) remains high. Moreover, because patients’ experience with treatments is a key component of their QoL and perceived health,6 PROs represent an important resource for clinicians, particularly when choosing the best therapeutic strategies. In addition, there is now evidence that the use of PROs can help to enhance the quality of patient-clinician interactions,7 patient satisfaction with care,8 and the quality of interdisciplinary support.9
But which PRO tool do I use?
Multiple tools are available to assess PROs in the context of HIV care and choosing the most appropriate tool will depend on issues related to content (i.e. what needs to be assessed?), setting (i.e. where?) and the intended purpose of the measures to be assessed (i.e. what will the information be used for?).
Generic QoL scales (e.g. MOS; MOS SF-36 and SF-12) have been used in the context of HIV infection,10 while disease-specific QoL instruments with a more accurate focus on the concerns of PLHIV have also been developed (PROQOL-HIV11 and MOS-HIV12). In addition, PROs have been integrated into routine care to assess a variety of concepts specific to PLHIV (Table 1).
Table 1: HIV-specific PRO measures13
PRO category | Example(s) of concepts
measured |
Health-related QoL |
Health-related QoL |
ART and adherence-related views |
Regimen fatigue Factors affecting adherence to ART Factors affecting readiness for ART |
Healthcare-related views and experiences |
Quality of care Quality of clinician–patient communication Interdisciplinary care Attitudes toward healthcare providers |
Psychological challenges |
Impact of HIV on self-concept Challenges of HIV survivorship |
Symptoms |
HIV-related symptoms |
Psychological resources |
Coping, resiliency |
Self-management and self-care |
Intention to adhere to HIV care |
HIV-related stigma |
HIV-related stigma and mechanisms |
Body and facial appearance |
Body change and distress Impact of facial lipoatrophy |
Social support |
Perceived social support |
Sexual and reproductive health |
Self-efficacy for HIV status disclosure, safer sex |
Disability |
HIV-related disability |
Adapted from Engler K, et al. 2016.
Where can I get more
More information on the use of PROs in practice is available from the following resources:
- Engler and colleagues reviewed the medical literature between 2014 and 2016 to create an inventory of HIV-specific PROs and concepts targeted over time.13
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- The American Institutes for Research (AIR) has published principles of patient-centred measurement.14
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- The International Consortium for Health Outcomes Measurement (ICHOM) is involved with standardising ways of measuring and reporting patient outcomes.15
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- The International Society for Quality of Life (ISOQOL) publishes two international, multidisciplinary journals: Quality of Life Research and the Journal of Patient-Reported Outcomes (JPRO), together with a user’s guide to implementing PRO assessments in clinical practice.16
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